Tuesday, April 9, 2019

What this cut-up pizza says about raising a child with disabilities

Max and I were out the other day and ordered a couple of slices of pizza. I asked the guy behind the counter to cut them into bite-size pieces. Max speared the bits adeptly and shoveled them into his mouth, hungry teen boy that he is.

This is what Dave and I often do when we eat out: We ask to have food prepared so Max can eat it on his own. I could cut up the the pizza myself, of course, but the pizza guy has a pizza cutter and he can quickly do it. It makes my life every so slightly easier, so I ask.

That is what I've learned to do over the years: to ask for what Max needs, and for what I need, too. I need you to call me, office receptionist, if the pediatrician is running really late so Max is not sitting around for 45 minutes getting restless (or me, either). I need you to email me weekly, school therapists, to tell me what you're working on with Max so I can do it at home. I need you to put our family in a quiet area, restaurant hostess, so Max won't get upset by the din and maybe we can all enjoy a calm-ish meal. I need you to make my son some rolls, sushi chef, with no seaweed because he can't chew that. I need you to let me know, big-deal specialist doctor, if you have any cancellations because we can't wait five months to see you and OK, I'll just call back tomorrow to check in.

Years ago, I revealed here that I asked restaurants to cut up spaghetti for Max, who isn't able to eat the long strands. (This was in the throes of his spaghetti obsession.) Chefs have super-sharp knives, and it's simple enough for them to do. Some people did not take kindly to that; one called me "entitled." And so, I wrote The Spaghetti Manifesto, declaring my right to find ways to make life work for Max and me, too. That's still the way I roll. Someday, soon, I hope Max will make the asks.

As parents, we juggle a whole lot with all our children—each one has their own needs. Even if we were fiercely independent before we had kids, even if we do more in a day than we ever dreamed possible (OMG WHAT DID WE DO WITH ALL THAT FREE TIME BEFORE WE HAD KIDS?!), we learn to ask others for help. Small requests, big requests, all the requests. 

Pushy? Nope. Just ultimate problem-solvers and road pavers. And we wouldn't have to be if only the world were more accommodating.

Power on, parents.


  1. Having them serve a meal that Max can eat unassisted is great for his independence. It's basic inclusion.
    My son's father used to manage a restaurant, and quite often they'd get groups of people with various disabilities. Some of the people required blended food, and the restaurant would happily oblige.

    It's not a big deal to ask them to spend ten seconds chopping up a meal for Max, if that's what he needs. No different to ordering a meal without one particular ingredient - an extra ten seconds of work, for a happily included person.

  2. The accusation of being "entitled" is fascinating to me. I think it's one of the main sub-genres of ableism. It's the sometimes spoken, a lot of times unspoken idea that disabled people are too coddled, too accommodated, and too free with "special requests" for another person's taste. And I think it's mostly about taste. Some people seem to have a visceral aversion to any hint of people asking for things that they themselves either have asked for and not received, or are too embarrassed or proud to ask for. If we could do away entirely with the concept of "entitled" I bet disabled people's lives would improve immediately and measurably.


Thanks for sharing!

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